I suffer from a rare genetic condition called Phenylketonuria (PKU) a genetic condition that is present at birth. My body is unable to break down a substance called phenylalanine, which builds up in the blood and brain.
High levels of phenylalanine can damage the brain, PKU is treated with a special low-protein diet, which reduces the levels of phenylalanine in the body and prevents brain damage.
PKU doesn't usually cause any symptoms if treated from an early age, however if gone untreated, damage to the brain and nervous system can lead to other associated disabilities, so this in its self is already one continuous battle I have had to contend with during my life.
On one of my regular check ups it was discovered that both my kidneys were failing, The doctors have told me that his condition now is not related to my PKU but another rare condition called focal segmental glomerulosclerosis with interstitial fibrosis. Apparently this condition is well know to the American medics who have thrown millions of dollars at programmes trying to understand why the bodies own mechanism destroys the kidneys, to date they just don't know what causes this and how to reverse the condition.
My only hope is a transplant, my weight has gone down to 6 stone and I am becoming increasingly weak and feel generally unwell. Like every donor recipient the match is the most important problem.
My dad wants to help but the surgeons have refused to take a kidney as he has kidney stones in one kidney we are both extremely upset but need to move on and raise awareness of the problem I am faced with and others alike.